My CRC with liver mets journey

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Claudine
Posts: 186
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: My CRC with liver mets journey

Postby Claudine » Thu Oct 17, 2019 10:08 am

:D :D :D
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

annieliz
Posts: 38
Joined: Fri Jul 26, 2019 5:13 pm

Re: My CRC with liver mets journey

Postby annieliz » Thu Oct 17, 2019 10:26 am

Awesome! Congrats and best wishes for a speedy recovery from surgery! :D :D :D
66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3
8/16/19 - 11/23/19 FOLFOX - 8 rounds
11/6 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
28 days Xeloda and radiation starts 12/16/2019

AlexandraZ
Posts: 108
Joined: Fri Aug 23, 2019 8:25 am

Re: My CRC with liver mets journey

Postby AlexandraZ » Thu Oct 17, 2019 5:34 pm

Wow wow wow, I am so happy for you!!!! :D :D :D

You and Julie are the main reasons Jesper and I are going to MSK, I'm just wrapping up translating all his medical stuff from Danish to English.

Congratulations!!!!!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Sat Oct 19, 2019 2:02 pm

Thanks everyone. I am three days out from surgery. No sign of complications, and they removed my epidural and my drain. I’m feeling both better and worse than prior procedures. I think the epidural has me feeling less constipated which is a good thing, and I haven’t had fevers on and off like last time. But I am soooo tired. Yesterday I walked four laps (two sessions) and today I walked three but it wiped me the heck out!! Even the prospect of showering isn’t appealing.

Before going through this, I reminded myself I needed to be patient. The first few weeks are just tough but by week four I was at about 85%. So I’m trying not to stress about being tired or having no appetite, knowing eventually I should feel better.

Ok just had a few bites of lunch and two glasses of milk. That’s enough for me! Time to nap again...
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Mohrfamily
Posts: 195
Joined: Tue May 22, 2018 4:04 pm

Re: My CRC with liver mets journey

Postby Mohrfamily » Sun Oct 20, 2019 5:46 pm

Gina that is so great to hear, I hope my hubby is as fortunate.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

Utwo
Posts: 260
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: My CRC with liver mets journey

Postby Utwo » Sun Oct 20, 2019 9:13 pm

I wish you faster recovery and the best luck!
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy #1: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy #2: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder and a lymph node

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 21, 2019 3:47 am

Day four was discharge day, and I feel so much better even than on day three. The incision pain is manageable even hours after my Oxy dose is due - maybe a function of the fact that they cut open scar tissue at the same site as my last procedure?

Today was the first day I really felt like eating: I polished off a bowl of Kashi, happily, for breakfast; had yogurt and half an English muffin for lunch, and 2/3 of a slice of NY pizza for dinner. Admittedly that’s not so much in quantity, but a big emotional relief to WANT to eat vs just being able to.

We checked out around 2 pm and I had a glorious nap as soon as we got to our destination. Then woke up for a bit and napped until dinner. I don’t think I realized how poorly I had been sleeping at the hospital until these amazing naps! Now it’s in the early am hours, and I am up and down reading blogs, etc. So perhaps I did too much daytime napping!

Our first borrowed Brooklyn apartment is just steps from the Barkley Center - and thus, a Shake Shack and a Donut Plant. This bodes well for future eating!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AmyG
Posts: 301
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Mon Oct 21, 2019 9:53 am

I'm so happy for you!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 21, 2019 3:29 pm

AmyG wrote:I'm so happy for you!!


And THEN I tried to walk to lunch for the first time. Got totally winded and panicked and it all ended up with me sobbing in a taqueria and asking our server for a hug because I needed my mommy.

I had been feeling so good, but I think a part of me felt like I put all this weight on getting to operable, because nobody thought I could. And then you’re finally walking through your light at the end of the tunnel and realize it’s still so scary and unpredictable what will happen. So everyone around you is celebrating your “victory” and calling you a badass, and you are just keenly aware that while you may have advanced your position on the board, you’ve still got cancer on your tail.

I’ve been at this for over a year. Maybe I didn’t realize until now how hard it’s all been and will continue to be.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 21, 2019 3:30 pm

Also I don’t know how many times I need to remind myself that my emotional stability is tied directly to how I am feeling physically. EVERY time this happens it’s because I got to a point where I felt like garbage.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: My CRC with liver mets journey

Postby stu » Mon Oct 21, 2019 4:00 pm

You are absolutely amazing . I think you are well entitled to a bit of a cry now and then . Maybe some more healing to get through but this has been one tough journey that you have endured . Take it easy , rest and sleep .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

AmyG
Posts: 301
Joined: Tue Dec 25, 2018 8:08 pm

Re: My CRC with liver mets journey

Postby AmyG » Mon Oct 21, 2019 9:21 pm

If you ever find yourself in the middle of nowhere Arkansas, come on over and I'll give you a hug.

You might feel like reheated dog shit right now and nothing like a cancer fighting warrior princess, but you have come so far and did what they said couldn't be done. Are you NED now or are you waiting for confirmation?

You had the courage to start this journey, the strength to endure and the resolve to finish. Be gentle with yourself, but seriously you're doing wonderful. I hope to god they take your off of the rash causing med. Has that cleared up for you?

Take your time but you know from experience that it gets better. :D
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!

User avatar
ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: My CRC with liver mets journey

Postby ginabeewell » Mon Oct 21, 2019 10:21 pm

AmyG wrote:I hope to god they take your off of the rash causing med. Has that cleared up for you?

Take your time but you know from experience that it gets better. :D


My last chemo was my last Vectibix. So it’s been a few weeks off and it’s getting better. But based on what I’ve read about Dr Kemeny, I think she’s likely to want to maintain it during mop up chemo as it’s proven to have “worked” thus far.

I’m mad at myself because I know it takes time but I was feeling so good I just overestimated what I could do! But I should have known, I get winded going to the bathroom to wash my face.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Punky44
Posts: 403
Joined: Mon Oct 01, 2018 4:29 pm

Re: My CRC with liver mets journey

Postby Punky44 » Mon Oct 21, 2019 11:51 pm

Just catching up but glad your surgery went well and continued good vibes during your recovery!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

boxhill
Posts: 404
Joined: Fri Apr 06, 2018 11:40 am

Re: My CRC with liver mets journey

Postby boxhill » Tue Oct 22, 2019 4:32 pm

So everyone is telling you you are a badass and a warrior and invincible and you are...but maybe you feel the need to live up to it and never give in? But you know, you need to be able to acknowledge fatigue and the need to rest and heal and act on it. It is not "giving in." It is being realistic and mature. You are in this struggle for the long term, not to prove how fast you can bounce back from a single surgery.

Yes, you can do it. But it's going to take time. We are all in this for the long haul.

Best of luck and big hugs to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable


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